I am so sorry to all the children and parents of these children that have been diagnosed with this tumor. I want you all to know, there is no cure and do not let your doctors tell you there is because there is NO CURE!!!! This tumor is very aggressive and cruel.
My advice to you is to love your children and give them hugs and kisses before this tumor takes over there entire body. Tell them you love them everyday. Spend all your time with them. Take them places to where they can enjoy what time they have left here on this earth.
Because of this tumor being so rare a lot of reseach is not being done and this tumor will continue to take children until there is a cure. Get friends, family, anyone involved to raise money to find a cure for this tumor so that no more children or parents will have to continue to go through this. MAKE PEOPLE AWARE of this beast!!!!!!!
My thoughts and prayers go out to you all!!!!